Clothing Optional

     Well, as far as Josh is concerned that is. If Josh had a choice, he would be naked about 80% of the time. I say 80% because there are times when he is without attire, that he will in fact, find some article of clothing and put it on. Not necessarily the right way (he has been known to put his legs into the sleeves of a shirt and wear it as pants.... ) nor is it always something of his, but he will do it. Most of my male friends smirk when I mention Josh's preference for nudity and tell me that this is not an "autism thing" but just a "guy thing". Point taken, gentlemen. However, I would be willing to bet that with the possible exception of my friend Tyler, none of them were stripping down at almost 12 years old and running naked around their houses in front of their siblings, parents, or anyone who happened to be visiting and I can pretty much guarantee that they are not doing it now, as much as they might wish that they could.

     Josh has been at this for years and as you can imagine, this does lead to some issues. To be honest, it's not so much an issue for us that he is naked a lot. Much like the Blue's Clues and the french fries, it's just part of who he is and we are used to it. The fact that he is quite small for his age likely makes it easier, since he still looks like a young child and not like a pre-teen. The issues are primarily that he is not yet fully toilet-trained, and that other people are not used to it like we are. The toileting we have been working on for many, many years. At this point, he will use it, but not consistently. He is much better these days about telling me when he needs to go so his being naked as far as that goes, is not quite as much of an issue as it used to be. But there are still times when that is a problem. When he was younger it was a tremendous issue, as I'm sure you can imagine. So much so that I had to come up with inventive ways to keep him clothed to prevent disasters. Interestingly, shoes were a big part of whether or not he would strip off his clothes. If his shoes were on, his clothes stayed on. If they were off or he could take them off, then the clothes followed. This was the case at school as well. What it led to was my finding shoes that he could not take off (or at least, take off easily) himself, that he would wear. This is actually a tie-in to the next entry which will be devoted entirely to shoes, so remember this! We are talking about many years ago, so what I found were essentially hiking boots - given the lacing, the fact that I could double tie them, and that they came up over his ankles making it impossible for him to slide them off, they were perfect. So this is what he has been wearing... for years. They were very relieved at school since he was no longer stripping there. There was still one problem though. You can't wear shoes 24 hrs a day. So I had to figure out a way to deal with pajamas as he would strip in the middle of the night, leading to a very wet and or messy bed every morning. He couldn't wear 2-piece pajamas (pants/shirt) since there was no way to ensure he would keep those on. What I ended up doing was taking onesie pj's (the ones with the feet), cutting the feet off, and putting them on him backwards so that the zipper would be in the back. This worked well for a while, but he became adept at undoing the zipper anyway. So I added a t-shirt over top, making it that much harder for him to get to the zippers. This did the trick and he wore these footless onesies with t-shirts over top to bed for several years. I'm sure this looked bizarre to anyone who might have seen it, but hey, you do what you need to do.

     As I said, he is better about not toileting on the floor these days (though it does still happen sometimes) and he also does not strip in the middle of the night any more. So he is back in regular pj's now. But he sure does like to run around naked during the day. He can take his shoes off now, so the shoes are no longer helpful in that respect. My sister and her family spent Christmas with us this year and she has 2 children of her own, ages 14 and 12. I warned my sister before they got here, to talk to the kids about the fact that they would likely see Josh naked a lot and to try not to be too distressed by it. She did, but I think it's always a shock when you really see it happening. They handled it pretty well, considering. Within a day or so, they got very good at yelling "Aunt Sarah, Josh is naked again!" from wherever they were in the house without too much awkwardness. When we don't have other people around I pretty much let him be on this one. There are only so many times a day I can put his clothes back on before I get to the point where I give up, and I have found that recently, he is better about telling me when he needs to go to the bathroom when he is naked than we he is not. If there's any chance that this will help to finally get the toilet training accomplished then naked it is. I have 2 rules: if he wants to sit down to eat or sit on the couch to watch Blue's Clues, he has to at least be wearing a pull-up, and if he does have an accident on the floor, the pull-up has to go back on.

     Given the choice, if he's wearing clothes, he would prefer they belong to someone else. Especially shoes, but watch for that in the next post. He particularly enjoys wearing things in odd ways, or that are too big for him. I'm sure all of this is sensory based for him. No, it's not that clothes bother him. I know that there are a lot of children with autism who are hyper sensitive and don't like clothes because of how they feel. No, Josh takes them off because he likes how it feels to be naked (stop giggling :P ) - it's a much more significant sensory experience than when you are clothed. Ahhh, to be young and completely uninhibited. I do realize that at some point as he gets older this will become much more of a problem if he continues to do it. What we will do about it in that case, I can't tell you. Life with Josh is pretty much learn, adapt, survive, grow, and I'm sure this situation will be no different. For now, if you ever visit and Josh is giggling non-stop and running a lot, it probably means he's naked.  You've been prepared.

 

It's Another Blue's Clues Day

     Well, decade at this point. To really know Josh there are a couple of things that truly define his persona. The one that is probably the most important is Blue's Clues. Children/people with autism have a tendency to become hyper-focused on certain things and Josh was/is certainly not an exception to that. Zach was 2 when Josh was a baby, and was just starting to be interested in some children's shows on tv. There were two in particular that he wanted to watch - Blue's Clues and Teletubbies (he was only 2, he liked it, HUSH :P ). There were some other shows that he grew to like over time, but those were the ones he was watching primarily for quite a while. Josh at the time, loved being near his brother. When he was only 6 months old, I noticed that he was actually watching the Blue's Clues episodes. He would literally sit in his exer-saucer and would focus his attention on that show for the full 30 minutes it was on. If you know anything about infant development, you know that this is not normal for a baby that young. At the time it seemed impressive, but we had no inkling that anything else might be going on.

     From that point on, his interest in the show never waned. In fact, it grew into an obsession. As time went by and his issues became more and more pronounced, it became entrenched into his life. Josh is verbal, but only to the point that he can request things that meet his primary needs (like food, Blue's Clues episodes, people he has a bond to, scripting, and naming objects). Communication will be covered in its own post later, but as it relates to this, about 90% of what Josh says is related to or directly scripted from, Blue's Clues. He can't tell me where something is, but he can recite entire episodes word for word. When you have him say "thank you", it will always be "thank you so much for your help today" which is what Steve always said at the end of the show. Salt in our house is always "Mr Salt". He will sometimes ask for episodes in his sleep. It's his whole world, it's always in his head. He adores the books. I have probably bought hundreds over the years. He spends enormous amounts of time looking at them. As a result they get quite worn out fairly quickly so they mostly end up as individual pages all over the house. I have toy bins in his room to keep them all when I pick them up at the end of the day. I can't bring myself to throw them out because he still likes to look at them. He will pick up a page that has to be 7 years old, worn, torn, and will carry it around with him and sit and look at it as though it were brand new. Of course the most exciting thing for him is when he gets new ones again. This is the bulk of any Christmas or birthday gift giving. He also loves the toys. Now, since the show hasn't been in production for several years (I cried when it stopped, because I know that it's everything to him, and eventually it will be very difficult to satisfy his obsession with it) it is getting harder and harder to find these things for him. The books for the most part are still carried by Amazon thank goodness, though some of the classic ones from the very early years you can only get via private sellers for hundreds of dollars. The toys are a different story. E-Bay always has a few, but for the most part I just have to rely on praying that battery replacement will be enough to keep them going for as long as possible.

     Of course then there's the actual show. I believe I have every episode ever made, across several different media - store bought DVD's, home made DVD's, TiVo, and yes, VHS tapes. There ARE many episodes he won't watch, for whatever reason. But he will on occasion ask for one that he hasn't watched literally in years, so I can never rule anything out completely. This does pose several problems. VHS players are practically extinct these days. I know I can record those episodes on to DVD's, which I have with quite a few of them, however Josh is so particular about this that he will even specify which medium he wants. For example, I have the episode of Blue's Birthday on VHS, store bought DVD, and TiVo. He will very specifically tell me which one he wants, and there are some episodes that he will only watch on VHS. So I have to keep them. Recently the VHS part of our DVD/VHS combo player broke. So after some searching I did find a wonderful machine, by Panasonic, that is a Blue Ray, DVD, AND VHS player and it will up-convert the DVD's and VHS to 1080 dpi which is pretty nice. But it will need to last us a long time, since it was hard enough finding a VHS player now, I imagine it will become impossible in the future. Aside from the technical difficulties, his incorporation of this show into his being means that it is on in my house almost continuously. This is going on 12 years soon. Yes, really. It's a good thing I like the show, I have nightmares when I think that it could just as easily have been Teletubbies....   !  He doesn't even really sit and watch it, well he does that, but more often than not it's background. I think he needs it always in the background. He can be upstairs playing in his room and if the episode ends or if he wants it to start again or heaven forbid someone turned it OFF, he will start asking for it again, from upstairs. Now, I realize that many people who read this are going to wonder why I allow this. What you have to understand is that Josh is not like you and I or his brother. You cannot reason with him because he does not understand and his tantrums are not at all easy to deal with. At a certain point, like with all children, you know you have to pick your battles. Some things are worth fighting for, some, are not. At what cost do we draw a line? That is up to each family and what works for them. There is a tv in the loft for Zach to use for watching, or his console video games if it's a weekend, so Josh's domination of the tv in the family room is not taking away from Zach. I don't watch tv much and when I do it's after the kids are asleep for the most part. At this point I think we are all so used to it, it's just a part of the background noise for us. Where it is somewhat disruptive is the fact that it requires me or Zach or whoever is here and capable, to manage the media center. It's not always just an issue of putting on a different episode. Sometimes he wants the one he's watching re-wound or to start over, sometimes you have to ff or rw through a VHS tape to find the one he wants, you have to search through the library of tapes, DVD's and TiVo episodes... I have actually catalogued all the episodes on the VHS tapes, home made DVD's and TiVo to make them easier for someone other than myself to find. That took a long time :P But it helps. The other time it's more of an issue is when people are visiting. Since we've been living with it for as long as we have, I often take for granted that other people may have a harder time with the fact that Blue's Clues is pretty much on non-stop here while Josh is home and awake. Ok, sometimes it's Little Bear, he likes that too. :) But you get the point. You can on occasion turn it off and be persistent enough that he will stop asking for a while, but that is not always possible. I put the counter on the blog to actually keep track of how many times each day I have to go to the media center in the family room to handle a Blue's Clues request of some sort. It's one thing to tell people he asks a lot, it's another thing to really see what I'm talking about in terms of numbers.

     So between the scripting, books, toys, shows, the quilt on his bed and his backpack for school, Blue's Clues is an integral part of Planet Josh and at this point it doesn't look like that will ever change. I am not sure what I will do when he is older, and these things are harder to get if not impossible. This is one of those "I can't go there" subjects (there are quite a few of those). Right now I just take it one Blue's Clues day at a time.

Welcome!

     Hello and welcome to the blog :)  My name is Sarah, and I am the mother of two boys, one of whom is severely autistic. For a long time now I have been thinking of writing about this. I initially had something more substantial in mind, but my very intelligent big sister suggested I start with a blog and I decided that was a great idea.

     Autism has certainly garnered a great deal of attention over the last 10 years and rightly so. However, I find that most of that attention is focused on one of two things. We see the "success" stories or we see the arguments over what may or may not have caused it. Don't get me wrong, I think it's wonderful to draw attention to the positives or when people have been able to do things that have helped their children in significant ways. I also do not have a problem with people expressing their opinions or fighting for their beliefs. However, I do feel like what has been missing is the reality of this for many of us. As a parent, I would often feel guilty when I would see news stories or read books about people who "cured" their children of autism, or recovered them significantly - because that hasn't happened with Josh. We tried many, many things and he has been receiving interventions or therapy of varying intensity and focus since he was 19 months old. I believe that for many of us, the big success stories aren't the norm and we shouldn't feel alone or guilty because of that. So part of this is to share with you my family's reality of life with an autistic child. I'm hoping that this will be of interest to many people, not just those in my situation. Chances are if you haven't yet, you likely will someday, run into someone whose life has been affected by autism in some way.

     What this is: with as much humor as possible (hey, laughter is GOOD!) it's a look at the day to day strangeness that is Planet Josh. What this is not: a place for political debate or to argue over things like cause or treatment modalities. We all have our own opinions and our children are all different and there are places where you can argue to your heart's content about those things if it's important to you. This is not one of those places :)  Here is where you can come to learn, laugh, maybe cry, relate, share, or spend a few minutes because you couldn't find anything better to read. Whether you are a parent, relative, teacher, health care professional, friend or just interested in how my life might be different from yours, please, read on.

     For a while, the posts will be focused on getting to know Josh. You can't really understand this planet of his until that happens. Since this is my first foray into the Blog-o-sphere, I imagine the site will evolve over time. So be patient, stick with me if you can, and I will do my best to make it work.

 

ps. the "counters" on the sidebar will make more sense after you read my first couple of entries.

 

Sarah